Friday 26 September 2014

Seeing my CF team again & back to work

So this week has been quite a milestone (for me)... I had my CF annual review review.... and started back to work!

So I started the week with a trip up to Papworth for my CF Annual Review review- I had all the tests done about a month or so ago, and this was the session to go through all the tests and see what needed changing in my regime and make a plan of action for the following year. Now, due to my transplant and how good I've been feeling, I wasn't entirely certain what they could offer as a plan other than 'carry on'... So off I trouped back to my old Monday afternoon clinic spot. Generally in the past, the Monday clinics were busy and took forever... we generally found that we wasn't leaving till well after 6pm, so I wasn't being too optimistic about getting home sensibly- I was wrong!

The clinic waiting area was pretty empty and very quiet, there only seemed to be a couple of people waiting for the other clinic, but no CFers lurking around, and no sets of notes in the box behind the reception desk. I was shown into my room and after a few minutes the guy came in to do my lung function. He was a newbie and despite not having been to a CF clinic for about 8 months, I knew the routine of things, and how the computer programme worked better than he did. He hadn't grasped the timings of the system and kept telling me to wait, even though the onscreen prompt said to blow now... so I ignored him and read the screen and acted accordingly! I don't think he appreciated that, but the quicker I'm through my blows, the quicker the next member of the team can come in, and ultimately get me home quicker!

After he'd left we waited a few more minutes and the doctor (Nadia) and specialist nurse (Sam) came in. I was kind of expecting to have seen the physio or dietitian before Nadia came in, but it was deemed unnecessary. So we had a few minute catch up of all my goings-on post transplant (on a personal side, rather than medically) after this we got down to business. My lungs are now not dealt with by CF so we skimmed over that section (seems daft to make me do blows if they don't do anything with them now!) from a gastro point of view, everything is looking good- weight, vitamins, sugars etc etc all well within a normal range and nothing needs altering... same with pretty much everything else in my body! Ultimate conclusion, I'm doing well, to keep it up and to have a bone scan (Dexa) sometime after Oct 2015... and I'll see them again for my next annual review (unless I need them in the meantime!) Then we were out of there and back in the car before 5pm!

Thursday saw my return to work. I confused the dogs by getting up early and having a faster than normal morning routine... and really stirred them up when I headed out the door around 9am! So I got to work, had a bit of a chatty catch up with people on the team, then set about trying to get logged in. All in all, it took me about an hour and a half just to get logged in to all the systems I needed that day. Then the first spreadsheet hit my email and I needed to switch my brain into Patient Tracker mode again... a mode it hasn't had to run since February. It was always hard enough getting back into the routine after a few days off, let alone 7 months! I was pretty damn slow and had to keep asking questions- almost like I was completely new!- but bizarrely my hands knew the pattern of things for navigating the screens... so although my brain was thinking 'how do I get to that section?' my hands had already done it! Weird, but true! The PAS claw has returned.... I had to fight the urge of eating all my lunch pre midday, I got away with just the treat packet of sweeties I'd put in there... I did however find that my desk drawers had some Cadbury's Buttons so that made me happy... I know I have emergency choccie in there now, but I doubt it will last very long. I managed a total of 4 1/2 hours which I don't think is too bad for my first day back. Next week I'm going to attempt 2 full days of 6 1/2 hours... let's see how that goes!

So after work yesterday I took the dogs out for a stupidly long walk- I know I need to be walking longer distances in prep for the Fright Hike, but having been to work, I'd estimated doing about 45 minutes... practically double that we were out for. I decided to avoid the route that leads to Judy going paddling in yucky stream water, thinking that it'll just be a case of walking around those bits of tress, and coming out to another point... my thoughts were very wrong! It would have just been easier (and safer) to go the way I knew and clean the dog up when I got home... instead we walked an additional mile and a half, I fell down a hole and bashed Bella's head on the way down, making her not want to come near me for a while, The dog's thoroughly enjoyed exploring though, and we were all suitably knackered when we finally got home!

Today's agenda consists of housework, food shopping... and a nice meal out this evening with Glen's brother and his wife. We try to get together every now and then for a yummy meal - which only seems be of the Indian variety, 3 of 3 get together's have been in an Indian restaurant! Looking forward to it as we always have fun conversations and talk about lots of TV shows, swapping ones to watch/avoid as we seem to have a lot of the same tastes. A nice end to a big week.

Tomorrow Glen is off to a game's convention and so me and mum decided we should go out for the day too... so we're off to Madame Tussaud's and who knows what else we'll get up to?!!

Remember to pop along to my Fright Hike sponsorship page and donate/sponsor me to help spur me on through longer training walks. Thanks to Glen's fantastic work colleagues, our target is really close to being achieved already! Dig deep and help us to help Papworth & Clark's Farm :)
www.virginmoneygiving.com/teams/BeardedBodysnatchers

Thursday 11 September 2014

Time for some reflecting

So today is 200 days since having my life saving double lung transplant... doesn't time fly when you're having fun (and breathing easy!) Over the past month or so (really since hitting the 6 month mark in August I guess) I've been doing quite a bit of thinking about how my life has changed... but also just how things were pre-transplant. I wouldn't say this was entirely off my own back, I've had quite a few serious (ish) chats with people about what I can do now and how this differs to my life before and it's got me thinking a little more about everything.

Pre-transplant. (The early years!)
I wasn't diagnosed until I was about 5 1/2 years old (by today's standards that's pretty late) so I had quite a bit of scarring damage already sat in my lungs when the doctors first got their hands on me! Through primary and secondary school, I was very active, doing almost any activity available to me, which helped massively with physio, and chest clearance. The eating side of things was never a good topic, and was a frequent cause of arguments and unhappiness. As I got into college, my exercise regime diminished, to pretty much just walking to/from college etc. I did do a bit of swimming from time to time, but nothing regular. Throw in a change from GOSH to an adult CF clinic at London Chest (LCH) and my whole CF life was kind of derailed. I never felt that I could trust the team there, so although they were altering my regime (supposedly for the better) they never really took into account of what I wanted/felt... all in all I became a lot less compliant with things, especially nebulisers and physio sessions. This fell in perfect timing with me going to Uni and being away from home. I no longer had mum breathing down my neck to do my treatments, or to eat at set meal times etc. I was suddenly free to do as I wished! Que a decline in my overall health.
I had my first ever CF related admission during the first year of Uni (age 19) which was quite a shock to the system. My lung function  had declined and my weight was pretty naff, although I think I did manage to pretty much maintain it despite having to cook for myself! During my admission, the consultant (in her ever lacking bedside manner) strolled into the room and basically said "if you don't buck your ideas up, we'll be putting a port in your chest and doing a gastrostomy" then turned on her heel and left me reeling with these new terms and thoughts of impending surgeries. Quite rightly, this freaked me out and I had quite an emotional conversation with my mum (who was probably in the middle of her office) I outright refused both of these suggestions and promised to myself that I wouldn't let them happen, I was going to do better and get myself well away from those possibilities.
In a nutshell, I couldn't prevent my lung function dropping due to catching Cepacia (a nasty bug that is very clever and resists most anti-biotics. Once caught you need extremely rigorous treatment quickly in a vague hope of getting rid of it.) and my weight never really did much - maybe fluctuating by a kilo. By the time I was a year out of uni, my lung function was gradually dropping into the 40-50% range, and I was needing more regular IV courses. Having had long lines through my arms for the past 4-5 years I was facing weeks of pain and discomfort with each course. It got to the point that I couldn't even last 2 days before needing the line changed due to it getting blocked and painful, so I finally gave in and accepted I needed to have a port-a-cath put in. 
In the summer of 2010  I had my port put in my chest. It was pretty much a pain from the start. It was in a ridiculous place (right in the centre of my boobs) so I had to butcher all my bras and remove the underwiring, it was also very stiff to administer anything, so a lot of force was required to push through bolus syringes of medication, and I couldn't ever have a drip running without a machine to pump it through, oh and it never bled back- which was one of the big selling points to me was that I'd no longer need to have blood taken through my arm, it could come out my port. Throw in the fact that it had to be flushed every 4-6 weeks and there was suddenly a lot more to take in than first thought... and now it was in me, there was no going back! In hindsight, it was the right thing to do, it did make doing IVs so much easier, and when it wasn't accessed it could be well hidden as I didn't (still don't) have the habit of revealing my boobs to all and sundry.

Pre-transplant (23 onwards)
I think my health did start the downturn when I went to LCH, but having had a few even worse experiences with some of the staff etc, I decided to change my care to Papworth. This decision was based on 2 key points- it made sense logically due to travelling, and if I ever got to the point of needing transplant (wasn't something I'd ever been talked to about, or even considered as being a route for me) my whole care could be managed by one hospital... and if it was good enough for Royals, then it must be good enough for me :)
Even on my first appointment with Papworth I realised how my care could be maintained and looked after in such a different way. Although within a few days of my first appointment, I was admitted for a couple of weeks, I had gone into my Papworth life with a more open way of thinking. They wouldn't admit me so urgently if they didn't see the need for it.  I had a heavy dose of new anti-biotics (they were actually trying new things with me, this was novel!) and had a strict regime of physio and saw the dieticians regularly who organised more food than I could shake a stick at. I saw more people before lunch here, than I did in an entire stay at LCH. I got out after that admission and did genuinely feel better. They were going on the basis of having semi regular 'MOT' admissions in the first year in order to try to kick my bugs into touch, with the hope that it will prolong the need for more intense admissions in the future.
Ultimately my lungs, although getting a fraction better initially, just couldn't carry on under such harsh abuse from the nasty bugs having fun and games in there. My lung function kept dropping to the point of now being around the 35-40% range. Now transplant was brought up quite seriously. This was a shock to me (and my family) as I'd always been so well, transplant was for sick people, so it didn't seem right for it to be considered for me. At this point I said it was something I'd consider in the future, but not even worth considering now. 
Next suggestion was the point of tube feeding as my BMI was never getting above 18 (into the normal range). I'd had a bad experience with a nasal tube at LCH and wasn't keen to try it again, but this was better than the alternative- a permanent stomach tube. So begrudgingly I tried the nasal tube on one admission. I got it down on the second or third attempt, but the tube itself only stayed down for a maximum of 5 minutes, but it was a good start. Next admission I tried again, got it down and even managed to tape it to my face and start watching TV... about 30 minutes later, a slight throat clear and hey presto! Tube back up. After numerous talks, demonstrations and my body's unwillingness to put on any weight we all decided it was time to have a PEG (stomach tube). The op went well, the post op phase started off OK, but soon took a turn for the worse when my oxygen levels refused to go above 80%, and one day I ended up as an emergency admission into Papworth as my oxygen levels (sats) weren't even above 60% - I'd turned a funny colour of grey/blue, and basically had no energy to even move, I was ready to curl up and just let what was going to happen, happen. Luckily, Mum & Glen got me to Papworth quick smart and within about 10 minutes of being put on a high level of oxygen I was my normal colour and back to being myself. This saw the start of my 24/7 oxygen needs. After this, I was permanently on oxygen- I had more portable cannisters delivered to home, along with a machine for when I was at home (and later got one for work too).
Although the oxygen obviously helped with my energy (and colour!) it was the start of me pulling back from doing everything that made me me. It was such a gradual decline, I don't think I ever really noticed (along with those that saw me daily) just how bad things were getting. It was only when people who only saw me rarely would make a comment (mostly to mum who then relayed them to me) that it would strike home how things had changed over that intervening period between visits. By the August of 2013 I was seen in the transplant clinic and it was felt that it was time for the assessment. My quality of life was majorly impeded by my oxygen and lack of lung function (now sitting mid 20%) despite still working and doing everything possible, I was permanently tired, and even only working 5 hours a day, I'd come home and normally be asleep on the sofa when Glen got home from work, I'd wake enough for dinner, then be dozing again until bed. Even after 12 hours sleep I still felt tired. My body was running on empty. My weight however was starting to increase thanks to the tube feeding, and I even had a form of a natural appetite, so I didn't have to tube feed as often as originally thought as I was actually eating like a normal person (some of the time!) I think just having it there as a back up took away a lot of the stress and pressure that had always accompanied meal times- we were now able to enjoy what I did eat, and if it wasn't a 'normal' adult amount, then I could feed overnight and not lose out on the calories/nutrients I needed. A weight had been lifted (no pun intended!)
September 2013 I had my 3 day assessment for transplant, and was followed up around November time. The doctors all felt it was time for me to be listed for double lung transplant. It was kind of what I was expecting them to say, but me being me, I refused to go on the list until the New Year- mostly because I had my holiday to Antigua booked, and I didn't want to go on the list before that and potentially miss out on the holiday if a call came in before! Silly I know, but you can't stop this girl having her holidays! As it turns out, the holiday was where Glen proposed so I would have missed out on having the holiday proposal and maybe wouldn't have even got the proposal yet depending on what happened!) So end of January I saw the team again and it was D-Day. I signed all the documents to put me on the active waiting list, was told it would be a few days before everything was 'official' but I was now waiting, and should be ready for a call anytime (although realistically it'll be months!) My lung function was now about 23%.
February I was started on a course of IVs (a week in Princess Ward, then finishing off at home) as I was feeling quite buggy and lethargic (more so than normal). Less than a week after finishing this course I got my call! Everything seemed to line up nicely for me- having just come off the back of an IV course, I was in a relatively stable position chest-wise. Obviously it was quite a shock (as told in previous posts) and everything seemed to go really slowly on one hand, but whizz by on the other!

How was I pre-transplant?? I was tired all the time, I had permanent back/rib ache from constant coughing, my hips were hurting (I was obviously holding myself all wrong due to the coughing), I was getting a lot of stress headaches from coughing, I was grumpy and fed up. I hated the fact that I was an imposition to my family, nothing could be done spur of the moment, it always took a LOT of planning to make sure I had enough oxygen, extra tablets, spit pots, places and provisions to rest if needed etc. Even a 'quick' trip into town seemed like a massive expedition that I needed accompanying on in case of emergencies. I was dependent on other people just for me to exist. Ultimately I was unhappy and fed up- not that I let on to others around me... well not consciously, but I'm pretty sure they all could tell.

It's only from sitting now, and looking back that I can admit just how unhappy I was. I wouldn't accept or admit it to myself back then. It was almost like if I ignored those unpleasant feelings then they didn't exist, and therefore couldn't do me any harm.... but in reality I think bottling them all up just made me feel even worse as I wasn't sharing my true feelings... I wasn't being true to myself, or those around me. Not a good thing!

200 days post transplant
I can honestly say that things are going great! I had a review appointment on Tuesday and they're really happy with how things are going *touch wood*. My x-ray is clear, my weight is good and most importantly my lung function was awesome- the total amount I can breathe out is ABOVE 100% and my FEV1 (how much I can blow out in 1 second) is at 96%. Compared to about 7 months ago when neither of those were above 25% I'd say that's bloody brilliant!! My exercise tolerance is amazing, the thing that holds me back is generally my limbs not being strong enough to do everything my mind and chest wants to do. I generally do feel so happy! Honestly, the only thing that I am a bit fed up with is that I'm sat at home doing boring housey things all the time, and not really having too much of a life purpose. I'm in the process of sorting out a staggered return to work (Drs gave me the OK to start back now I'm post 6 months) so hopefully I'll start to feel a bit more like a 'normal' adult again going to work. Although I'm sure once I'm back into the working life I'll miss all my free time!
I am now no longer dependent on anyone, if I want to go out for a wander, I just go. If I want to go swimming, or for a bike ride, I get my bits and go. Planning time away more than a week in advance is now possible as I can pretty much rely on the fact that I will be well enough, and have enough energy to cope with whatever is planned. Days out can be done spur of the moment, I don't have to worry about only having x amount of oxygen cannisters until my next delivery.
I can cook my own dinner without fear of blowing up the house, or having to come off oxygen for time in order to cook using gas. In our new house, I wouldn't have been able to be in the kitchen, dining or conservatory (all open plan) while Glen was cooking due to the fire risk so I would have been confined to the living room only.
I now have such an appetite and interest in food that I want to get into baking/cooking properly, whereas previously I had no interest at all in anything food related. I was tempted to make Glen a birthday cake, but after my first attempt fell a bit flat, I thought it would be more of an insult to serve him something pathetic... so I defrosted a bit of our wedding cake for us to munch through! Much nicer.
Obviously June saw us get married and go on our honeymoon. Although we'd planned it with the thought I'd be on oxygen and very tired, the fact that I got to that important milestone with nice new shiney's was beyond amazing. It probably was the best wedding gift (lovingly sent from my donor angel!) we could have received. I was able to be part of every second of the day without having to take time away to rest. I enjoyed walking down the aisle unassisted (by person or oxygen), I could have my first dance unimpeded by wires and I could generally float around the venue in the princess dress that was sooo me! None of that would have been possible if I hadn't got my op. Our honeymoon, we barely stopped! We walked sooo much, I could run, play, climb, dance etc... (yes I'm a big kid!) and generally just enjoy being with my husband in Disney, practically without a care in the world (I was missing my Judy obviously!)
Since then, I've been building up all the exercise I can do- starting off with support from the gym trainers, or family/friends, but now I'm off to fitness classes, going swimming, doing epic walks with the dogs, going for bike rides etc... none of this I really saw myself being able to do again... even the thought of having the transplant didn't really compute just how much my life has changed.

When a 'normal' person has to take the dog for a walk, or force themselves to the gym after a particularly 'foody' weekend they see it as a chore 'I suppose I'd better take the dogs out for a walk'... or even a trip to the supermarket to do the weekly food shop. For me, although sometimes the timing isn't great, or I have to juggle things around in my day, the actual act of going out and doing whatever is a happy thing... because I CAN do these things for myself now! I'm sure over time the novelty will probably wear off and dog walking, exercising and food shopping will be seen as a pain in the bum, but for now I'm grateful for them. I appreciate just what living is, and I'm doing just that... I'm LIVING my life now, not just existing.

200 days on for me being able to live, means it's been 200 days that my donor's family have been without her.Thank you to my wonderful donor angel. She was a brilliant and kind lady who even in death was able to give the most wonderous of gifts... she gave me back my life! 

Wednesday 10 September 2014

Surprise 30th birthday trip

So I had a busy few days...

Last Thursday I took the doggies to the kennels (for Judy the first time in about 8 years she has been left in a kennels- I was a very worried mummy!) I went for an assessment at the local adult education centre for possible enrolment onto an accountancy course (passed with flying colours, and even scored better than the tutor on the maths section!) and then went to pick up Mr Glen from work ready to start his mystery 30th Birthday trip.

We stopped the night in a Holiday Inn in Corby, about an hour and a half from Glen's work. We had a lovely meal- albeit my curry was far too hot, even with the extra yogurt they brought to cool it down! The room was nice and comfy but we had to be up and out relatively early to get on with our day. Breakfast was nice (even got fresh eggs and pancakes cooked and brought to me personally due to the whole buffet/germ issue with my transplant). We then got on our way. Glen drove and about 45 minutes before arriving at our destination, Glen guessed where we were headed... and only because he saw the giant brown attraction sign. We were heading to Alton Towers!

Glen on the cable cars
When we arrived we parked up and headed into the park. I couldn't believe the cost of tickets now... luckily we got bogof otherwise it would have been practically 100 quid just to enter! Anyhoo, we had a lovely day round the park- experienced all the rides we wanted to with very little queue times. The longest we had was about 35 minutes for Smiler. As this was a new one for us, we figured it was ok to wait that long, although with the number of spins and twists my head did feel a little delicate afterwards. I know it's a world record holder for highest number of inversions-14- I do think it was one or two too many for me! Glen and I decided to bite the bullet and upgrade our day ticket to an annual pass for Merlin attractions in a bid to encourage more day trips to places.. we only need to do 2 more trips to theme parks in the next years to get our money back!

After our day we headed to our hotel for the night (about an hour away) We had a lovely trip through teeny tiny country lanes and eventually ended up just outside of Stafford. After we'd checked in and had a brief rest we headed into Stafford town centre for dinner... only to find that it is little more than a ghost town! Considering it was a Friday evening we probably saw a maximum of about 10 people walking around, and very little by way of eateries on the high street... weird! We eventually found our way to Frankie & Benny's... were served by a newbie on only her second shift. Provided us with some light entertainment, and a slight worry that we wouldn't get what we'd ordered... but all in all the food and evening was pleasant. Back to the hotel for some much needed sleep!

Saturday morning we had breakfast (not as nice or plentiful as the Holiday Inn the previous morning), checked out and headed back to Alton Towers for a day in Splash Landings water park. We had a blast (even though it was mostly blurry due to not being able to wear my glasses!) We did the flumes and water coaster, rode the lazy river numerous times and generally just acted like big kids for a few hours, I had no chest or tiredness issues etc. The only thing I did manage to do, was injure my foot by landing strangely coming off one of the slides. It felt fine after a couple of minutes... until later in the afternoon in th car home when I took my shoes off, then found I couldn't get it back on as it had practically doubled in size! I ended up having to strap it up for the following 2 days and try to keep it elevated and rest. Easier said than done when you have jobs to do and places to go... but it's pretty much sorted now, an odd twinge if I put weight on it in a strange way. After finishing in the water park, we went into their buffet restaurant for yet more pizza based foodage. We filled our boots then made our way home. Having made a brief stop in Ipswich for Glen to pick up his car, we eventually got home Saturday evening. I sat with my foot elevated and we vegged in front of the tv and had an early night. All in all Glen had a fab birthday surprise trip, and I enjoyed it too! Duh!

Tuesday 2 September 2014

The past few weeks

So recently things have settled down a bit and I am actually taking things a bit slower- much to the appreciation to those around me! I can't stand sitting about doing nothing (as I'm sure you're well aware by now!) so have still been trying to fill my days with things a little less hectic...

The dogs and I have been doing a lot of exploring of the local area, on lots of long walks... Judy loves this and looks like she just wants to keep going, whereas Bella often seems like she's about to drop on the spot... but within a few minutes of being home, she's up for more antics! We've explored all around the local barracks' grounds, and woods/parklands. Found some really lovely walks and even got Glen out a few times of a weekend which has been nice. These extending walks have been good practice for my sponsored event I've now signed up for (details below) and look to keep getting longer.

I'm raising money for Clarks Farm Greyhound Rescue and Papworth Hospital NHS Foundation Trust Charity by doing the Fright Hike through Epping Forest. Please sponsor me at www.virginmoneygiving.com/team/BeardedBodysnatchers

My mum, our friend and myself have signed up and want to raise money for the two charities mentioned- Papworth due to all the fab work they've done, not just for me, but for all the CFers under their care... I wouldn't be where I am now without them! I'd like to raise money to buy them some kind of fitness/gym equipment for the patients that can't go into the unit gym due to cross infection issues. I know when I've been an inpatient and felt up for doing some kind of exercise I've been really restricted as the equipment they have is in the unit- if you grow particular bugs, you can''t go in there :( We're also trying to raise money for a local retired racers rehoming kennel... it's where we got Bella from and think they could do with a little helping hand with winter fast approaching- maybe get them some new blankets or bedding etc. If you could spare, even a pound or two it will all be a help to get these 2 charities a little extra help :) *smiles sweetly*

I mentioned this a while ago, but am looking at doing a form of education course, I've pretty much decided on starting up a level one accounting course. Yes, it's going to cost me money, especially if I progress to the higher levels without it being part of a job, but it will get my brain (yes I do have one hiding somewhere in my head!) working again, will give me new skills and hopefully will give me motivation and the tools to look for a new kind of job which will stretch me and give me a bit of job satisfaction again. I go for an interview/assessment later this week to see if I can sign up to the local course, so fingers crossed!

A few clinics ago I asked for information on my donor... the first time of asking I got put off (is what it felt like anyway!) so the next time I went up there I made sure that whoever in the team I saw, I mentioned that I wanted to know at least a basic amount about my donor. By the end of that clinic I was taken aside by the nurse who had found out some information for me, but wanted to know what it was I wanted to find out (she only had restricted basic knowledge, and if I wanted more then she'd have to go and request it etc) It turned out she knew what I wanted to know so we could have our talk about it... mum obviously wanted to be a part of this conversation so she came in too. In a nutshell, my new shineys came from a lady in her 60s who died from something head related, and had no other concerning medical issues listed. We also (mum and I discussed this at great length after) kind of sussed that she was from the North... but as they tx team can't give details as to whereabouts donor organs have come from she couldn't say.... I'm glad I know that they came from a lady, as now we can think about getting a fitting tribute for the garden that is appropriate- I didn't want to get something really feminie if the lungs had come from a bloke for instance! Ultimately, I want to write a letter to her family (assuming she had a family of course!) and show them a picture of the tribute and let them know just what her gift has given to me.. but I don't feel quite there in terms of knowing what to say!

I've now finally been able to start swimming again as my steroid dose is below the level that the doctor said it should be... literally the days where I was reducing the dose I was paying close attention, and as soon as I had done my 7 days at the lower dose I was straight away asking Glen if he wanted to go swimming with me! We've been 3 times now to or local leisure pool to play in the wave area, been on the slides and in the rapids area... it is SO amazingly awesome to be able to swim, and play about... dive under water, do handstands and roly -polys etc all without a worry. I feel so FREE!! I can tell that Glen is worried about me most of the time, and any slight throat clear or splutter (I've never been any good at keeping water out my nose!) and he's there questioning if I'm ok... and surprisingly I'm fine :D my chest is feeling worked, but in a good way, there's no stupid choking or struggling to get air in... I don't have to take 10 minute rests on the side after swimming 1 measly width.... and most importantly I can swim wherever I feel like in the pool as I don't have to keep within 2 foot of the wall attached to someone carrying my oxygen along the side. Ultimate freedom and happiness :D